UK Government and the NHS:Provide more adequate treatment options for children with neuroblastoma and relapsed neuroblastoma in the UK.

Perhaps you have never heard of Neuroblastoma. It is an aggressive cancer that attacks 100 children in the UK every year. In the event that a child is diagnosed with this disease,it is treated, but if the disease returns -- then there are very limited and restricted protocols to treat the relapsed disease in Britain.

There are two main issues- immunotherapy (which helps prevent relapse) is only offered on the basis 2 specific clinical trials. If a child doesnt meet the criteria then they dont get the treatment.

Simple.

That's right, under certain circumstances, a child might just not be treated in the UK at all!

The Only way to get such treatment is to go abroad & pay for it.

Secondly, in the event of relapse, treatment options in the UK are very limited and survival rates are very low. To have a significant chance of beating relapsed neuroblastoma you must again go abroad and pay for more advanced/specialist treatments.

Accordingly the children and their families are simply left to literally beg for the hundreds of thousands of pounds supposedly required to treat the disease in the USA or Germany.

Imagine, being the father or mother of a child and being told A your child has cancer B The Cancer has been treated successfully C The cancer is back D We don't treat cancer here if it has returned E but it can be treated in other countries but F you need hundreds of thousands of pounds to pay for it.

The Neuroblastoma Children's Cancer Alliance helps families face this trauma and helps them raise literally millions of pounds each year to fund treatments. However, this literally means getting out the begging bowl while all the while the child waits... and waits.... and waits.

The Neuroblastoma Children's Cancer Alliance website can be found here.

It is just not right and unfortunately not all of them make it and the worst nightmare becomes a reality. The disease takes hold to a level that is fatal and they simply....DIE!

This situation cannot be allowed to stand.

This is what needs to change. Either the Government and the NHS need to bring these treatments to the UK OR they must fund the cost of the travel and treatment.

There should be greater funds available for research and most of all there should be help provided to these families who pay their taxes, work and generally contribute to the fabric British Society.

Yet in their hour of need they are abandoned.

That is a disgrace.

I want to change that. I want there to be a focus on why this is allowed to happen with the Government and the NHS Managers looking into why there is no treatment, why the treatments elsewhere cost so much and why there is a need to go abroad for any available treatment.

It is not right-- it is not fair and it is not what our NHS was meant to be all about.

I don't have solutions or answers but I know that sitting doing nothing is no answer at all.

It is time for change, so please sign the petition and join me in calling for a stop to this current practice and for the introduction of greater help for anyone dealing with this supposedly "rare" and dreadful disease

Thankyou for reading.

Letter to

UK Government and the NHS

Provide adequate treatment and funds for children with High Risk Neuroblastoma and relapsed Neuroblastoma in the UK